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Ichthyosis Support Group

Charity description

The ISG vision:"The ISG is committed to the ongoing provision of an information network and support structure for sufferers and families affected by ichthyosis. Associated with that we need to create a greater awareness and understanding within the medical profession, and lobby for greater research into this distressing condition"

The Ichthyosis Support Group (ISG) is a small user led charity, run almost entirely by volunteers affected by ichthyosis to create a supportive network of sufferers, parents and medical professionals. The charity strives to raise awareness of the condition and the ISG amongst medics and the public.Ichthyosis is a rare genetic condition which predominantly affects the skin. It can affect as few as 1:300,000 people depending on the type of ichthyosis, of which there are many. It is a lifelong condition, usually presenting at birth and may be fatal. For many the daily bathing routine is rigid. Ichthyosis skin requires rigorous scrubbing to remove excessive growth and prevent infections that can cause death. Thick greasy creams need to be applied constantly to prevent the skin from drying out and cracking. If left to dry out it can cause contractures, which can even break bones in tiny fingers and toes and the sufferer endures excruciating pain.